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auto immune deficiency

The next months were some of the best in my life. Times like these were what I had been aimlessly searching for, and my time was now. Still yet, I had the rather large task of keeping my health – specifically CMT, a secret from the love of my life. Masking my daily functions is a big deal, but it was worth the pain and discomfort to me. Our days usually consisted of talking. Some days we planned picnics and fishing trips. All in all, it was most wonderful, but the pain was still present, tossing me around, controlling my life and causing me to hide truths about myself, but worth enduring just to see her smile.

I definitely had stronger feelings for her but I struggled to keep them at bay, because certain circumstances applied. We both had voiced our opinions about a relationship, and both agreed that just staying “friends” was what we both wanted. She had just left a nasty relationship and I had been bouncing around with no happiness in sight. When we spent time together things just seemed perfect. I didn’t want to accept this at first, but I really could not fight off my feelings for her. After a few weeks had past with some quality time invested I saw a perfect opportunity to stake my claim. I knew, deep down, this could be a big mistake on my behalf. What if she said no? What if she didn’t feel the same way as me? These two questions were beating me up inside so I decided to bite the bullet.

Knowing she planned on returning to Florida in a few months I took a huge risk. Finally one day, I just swallowed, took a deep breath and looked up at her and said, Minda, (I paused), will you be my girlfriend? She was shocked, I’m sure, hearing that question coming from me after I had clearly stated I was just not interested in a relationship at the time. She looked up at me, smiled and said, “Yes!” Wow, I have yet to ever describe that feeling accurately but, if I had to I would use one word, it would be AMAZING! That night I was riding a high and feeling the best I had felt in years. Later on that night she said, “I never thought you would ask!” I thought to myself, if I had known you felt that way, I would have asked a long time ago! I knew this was the girl for me, never second guessing the decisions I had made.

After a few weeks, I decided to move in with her and her family so we could spend more time together. This was definitely an easy decision for me to make but, on the other hand my health and worries were extremely hard to hide. I constantly considered how I would do things so no one would ask about my feet. Even so, the occasional question would come up, someone asking me, “Why are you walking like that?”, or, “Did you hurt your foot?” I would quickly respond in a way so the question would be forgotten. These stressful thoughts often clouded my mind, distracting me from the important things happening in my life. Still, I was very adept in masking my pain and hiding my physical decay.

I kept a bandage and ointment close to me and my feet pretty much all the time, always keeping my feet hidden as to avoid questions about them. The pressure ulcers were becoming larger and much worse when they reoccurred. I counted on my family members to obtain my oral antibiotics used to treat the infections in order to avoid the doctor visits that would blow my cover for sure. Anymore, I was terrified for someone to even say the word “doctor.” But the pain was unbearable at times, sleep was almost nonexistent, and plain and simple, my life was deteriorating. Yet I had plans for Minda and me. I was determined to let nothing stand in my way, not even my sickness.

I was becoming really overwhelmed by everything happening at work and at home. My job was physically demanding and left me drained by the end of the day, not even wanting to be social at all. My feet hurt so badly, by the end of each day I found myself sitting down and thinking of any excuse to stay home. Pretty sad to tell you the truth, I was once a very social guy, on the go all the time. Now, I felt useless and non-deserving of the special person God had blessed me with.

After a few years together, we moved into a house we could call our own, home sweet home. We spent many hours working on our new home, we were so proud and feeling accomplished. Painting, sanding, and cleaning were very hard for me to do. Moreover, I was always dreading even a walk outside to the mailbox. I was in a lot of pain. Even so, some days were better than others. It was during this time we became engaged and started planning dates, looking forward to the big day. My life was coming together yet at the very same time, falling apart and nobody knew this but me. I felt completely alone yet I had tons of love and support all around me. My decisions were becoming my demise but, I had so much to live for and a great person in my life who would do anything to keep me safe, if only I would be honest with myself and with her, and let her into my secret, pain filled world so she could help me.

My daily life became more challenging as time passed. Not a day went by that I didn’t wish I was someone else — with a love for life, more spring in my steps, and the will to make and accomplish goals in my life. Sad to admit this. I strived to make the best of what I had to work with. How I handled my physical disabilities was totally my choice, but keeping my problems a secret created an extremely difficult life. I made certain I looked fine – completely normal — to everyone. I kept Charcot Marie Tooth a complete secret – no one knew my condition, not even the doctors. I stubbornly ignored all the warning signs and symptoms. That was the life altering mistake I would later regret.

I lived with my grandmother, a single young man too embarrassed to let others know how I really felt – scared, overwhelmed, in so much pain. I was missing the best days of my life, spending most days in a chair, my feet elevated, nursing yet another infected wound that had flared up on one of my feet. Briefly, my feet would eventually take a turn for the better, but a few weeks would pass and, sadly I would be in pain and sporting an open wound yet again. These open sores are very difficult to explain to people who are not familiar with neuropathy. The feeling of no feeling, complete loss of sensation in your feet, yet at the same time, constantly throbbing in pain, falling and pitching, and just plain miserable. How do you explain no sensation yet throbbing pain simultaneously? When I developed an open wound, I could never feel it forming. I would notice a soiled sock and instantly my heart would drop. I spent more time searching for a place to prop up my feet and less time enjoying my young life. I imagine people assumed I was an introvert, a recluse, preferring to stay alone and inside even on an inviting, warm summer day.

I turned to social media to for most of my teenage life. The internet was a Godsend to me. I could sit and recover, yet be plugged into an active life. As a young man, I had dreams of becoming successful and meeting someone who would make me happy. In an odd sense, this made me happy and I felt active again. I made lots of internet friends who only knew me as being a funny guy, always joking and full of life. My friends never suspected the funny, full of life guy was hiding tons of hurt and anguish. I made sure to keep my distance from people, never revealing how sick I had actually become. I wondered if I would ever meet a special lady with whom I could be 100 percent “me”. There was always going to be that fear of pushing away someone for whom I cared. These are thoughts a young man should never have to experience.

I received a message via. facebook from this beautiful girl I had never seen before so instantly, I became overjoyed and hopeful. We communicated back and forth, I put forth all the witty charm I could muster and finally said the words, “would you like to hangout sometime?” A reply of yes, and I was glowing with hope yet nervous she would discover my secret CMT disease. The next day I jumped in my ol’ truck and was on my way to pick her up for the first time. I carefully planned a date that didn’t involve anything physically demanding. I sure didn’t want to give away my bum health immediately and risk pushing a good looking woman away from me. We rode around for hours just talking, it seemed so nice to finally connect with someone and seek comfort. For the meantime, my mind was at ease, not pondering thoughts about health and wellness. For the first time in a long time I was dulling the pain with happy thoughts.

That night, I had no intentions of developing feelings for her but I did. I honestly could not stop looking and smiling at this beautiful girl. I was being torn between a great girl and a degenerative disease. I chose the girl and decided to try and hide the cruel effects of CMT. I could not risk losing this special person. I had no idea what a meaningful blessing she would be to me. Lord knows I was occupying my mind with dreams and hopes of joy and not poisoning my thoughts with CMT. My life’s problems were beginning to simplify or so I hoped so…

Most peoples’ daily routines start with coffee and breakfast. A day in the life of a person with CMT varies quite drastically and can be rather challenging. Please let me explain.

If we’re lucky, we had a great night’s sleep, and we need sleep and rest so badly to counter the naturally occurring fatigue plaguing people with CMT. Consistent restful sleep is critical, providing the energy to face the day. People with CMT desperately need lots of sleep. Unfortunately, we very rarely, if ever at all, get a fraction of the sleep we require, almost never, actually. I constantly toss and turn all night, as do most people with CMT. My arms and legs burn and ache, yet at the same time, are constantly freezing cold on the inside and feel extremely restless. Many nights, I just give up on the sandman completely. Many people, including myself, are caffeine addicts – morning coffee makes facing the day without sleep somewhat more tolerable. Most people shuffle into the kitchen, still half asleep and prepare a pot of coffee without even thinking about it. I reach for the coffee filters and the battle begins. My fingers will never separate just one thin filter – the filters all stick together. Wrestling with the stack, I eventually get one or two or some filters to separate. Good enough. I insert the filter(s), struggle with the lid on the coffee container, finally wrenching it off the container, sometimes spilling the contents, sometimes not. People with CMT have very little use of their thumbs and forefingers. A dog could make coffee just as successfully, a raccoon or a monkey probably more efficiently than a person with CMT. Scooping the coffee into the filter is yet another challenge. Precariously balancing the scoop, I slowly fill the filter with coffee grounds, and start the perk, not a matter of seconds, rather, this takes minutes to achieve. People with CMT learn to add precious time to every task.

Beep, Beep its go time! Coffee is ready. Yeah! I pour a cup, nothing quite like that coffee aroma so early in the morning, or that first delicious taste! A little bit of Heaven, especially after a long sleepless night. I grasp my mug, like I’m clutching it with paws, which, pretty much, is exactly what I am doing with my minimal to useless thumbs. Atrophied muscle in my hands renders the mug too heavy to hold. I must actually make a mental note to grasp the mug tightly, even though I cannot really feel it. This is also somewhat dangerous – this is hot coffee and the heat of the mug will burn my hands, but I can’t feel the danger, because I cannot feel the signal of pain. As I cannot feel the pain, I inadvertently forget it could be dangerous. Holding a coffee cup is second nature to most people. Only people with a neuropathy like CMT must mentally tell their hands to grasp the cup while being mindful not to burn their hands in the process.

Now I’m hungry. My favorite breakfast food is cereal. I walk to the cabinet and pull out a new, unopened box. Great, I think to myself, here we go again. Breaking into the glued cardboard is difficult enough but the plastic bag containing the cereal is my true nemesis. The cereal bag and I go to battle several times a week, usually ending in the bag’s utter demise. I completely destroy the bag attempting to open it. This is a typical site gag on T.V. but in real life – it really isn’t all that funny. I paw futilely at the bag which ultimately splits it in two, sending cereal flying, making a mess. If the bag holds at all, it is no longer very useful, resulting in stale cereal next time. Just a day in the life. Right now, you are thinking, “why don’t you just use scissors?” Good question. Stubbornly, for once, I expect something to happen the way it should happen, the way it happens for most people, using no extra steps or preparation. Definition of crazy – doing something the same way over and over and expecting different results. That’s me and those blasted cereal bags. Just once – open easy.

Plastic bags, ziplock bags (without the actual zippers), paper grocery bags without handles, large plastic garbage bags all have their own, special, evil annoyances. Opening bags causes frustration, but that chore pales in comparison to screw off lids on jars. People with CMT break a sweat trying to open jars – heck, sometimes we break the actual jar! For us, removing the jar lid without assistance is pretty much impossible. Those of you with CMT reading this blog are nodding right now. We spend much of our days wrestling with bags, prescription bottles, screw lids on jars, pull tops on drink cans. People with CMT become very Darwinian in their thinking. We gotta be smarter than the container if we want to eat or quench our thirst!

Daily living presents challenges but for every challenge, I manage to Darwin a solution. Incorporating different inventions, simple or complex, help me adapt to each daunting task, be it cereal, coffee, or tying my shoes. My pocket knife rocks. This is my favorite tool. Forgetting to bring it with me everywhere completely complicates my day. Rarely used for cutting, this tool provides the dexterity required for picking up objects dropped on the floor. Coins, keys, anything with a flat ¼ inch height or less are just miserable to retrieve. Without the assistance of my pocket knife, I don’t even bother – the object usually stays on the floor. Unless I’m extremely lucky, bending down to make a quick snatch doesn’t happen very often. More likely, I bend over and make several attempts to grasp the dropped item, running out of breath, all red faced and gasping, then stagger backward, and occasionally, fall. Other people look at me like I’m faking something or drunk. I get so embarrassed and frustrated. People assume I am angry. I’m not mad at all, just frustrated, and embarrassed.

Pull tabs are pried open with anything handy – a key, a fork, a writing pen. This doesn’t always go as smoothly as planned and either leaves me sticky or smelling of the can’s contents. I love my oversized keychain. I mean giant sized keychain — so big, it barley fits in my pocket. My hands can manipulate this monster keychain and I can fish my vehicle keys out of a pocket every time.

Honestly, the very best, tried and true tool I have discovered, a tool guaranteed to always work every single time is tenacity. I never give up. Ever. If I cannot achieve a task one way, I try another way, then another, then another. I will succeed and revel in my earned victory of success, big or small. The victories add up, so the positives add up. There’s always a pony in there somewhere.

The days passed. My condition deteriorated. I suffered chronic pain, mentally and physically. The challenge to maintain the façade became almost too tough but I continued to shove reality into a distant corner and slap on the happy face daily. The stress definitely took its toll on me. No matter how tough I presented myself to the world, many times I found myself slipping. I was beginning to crater. I may have fooled some people, family and friends, but mostly I fooled myself. When asked, “Timmy, are you ok?” or “Timmy, how did you hurt your leg?” I shrugged it off, attempting to redirect their attention, laughing and changing the subject. I breathed a sigh of relief, believing I was successfully avoiding burdening anyone. Deep down, I was scared to death, frightened at how sick and disabled I was becoming, frightened it was getting more difficult to hide.

One of the main reasons I never received the medical care I needed was the expense. Medical expenses were a huge stumbling block while I was growing up, coupled with the lack of knowledge concerning my condition and the lack of treatments available for patients with CMT. Patients with CMT were often misdiagnosed and actually still are today. Many people with CMT are actually diagnosed with Multiple Sclerosis. Multiple Sclerosis is an autoimmune disease that presents with almost identical symptoms. When I was a child, no doctor treated the actual disease – the CMT. Instead, doctors focused on treating the symptoms. Sadly, to this day, this still occurs and to this day, there is no real treatment or cure for CMT or consistent success in treating the symptoms. Patients find relief experimenting with different drug protocols and therapies but no drug or therapy seems successful long term. So patients with CMT tend to get shuffled around the medical community simply because no one knows what to do with them. With an inherited disease like CMT, the entire extended family is affected with multiple patients in every generation. Oddly peculiar to families with afflicted with CMT, collectively, the extended families feel shamed by the disease. Strangely, entire families attempt to hide their family affliction of CMT to the public. It has only been in the last couple of decades, literally, patients with CMT are finally stepping out of the shadows, many times, much to their families’ chagrin, and purposefully creating awareness of CMT in the search for answers and a cure.

As a little kid, and to this day, late at night, or in moments of weakness and insecurity, I secretly ask myself those looping, haunting questions: the “why?”, the “what if?”, the “how come me?”. Now, as when I was little, I force my mind to silence this absurdly useless thinking. This is my life and I choose to be proud of my life. In spite of my challenges with CMT or because of them, I continue to push through my limitations every day.